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Autism Spectrum and Developmental Disorders
Katie Dennison, M.P.H.
Clinical Research Coordinator
University of California San Francisco
San Francisco, California, United States
China Parenteau, B.A.
Clinical Research Coordinator
University of California, San Francisco
Philadelphia, Pennsylvania, United States
Shuting Zheng, Ph.D.
Assistant Professor
The University of Texas at Austin
Austin, Texas, United States
Table 1: Main themes of feedback and revisions Aspects of EMA Wave 1 Feedback Revisions Implemented Wave 2 Feedback Capturing Daily Experiences EMA might miss emotions or events that influence daily mood Added end-of-day audio recording Captured missed details; some preferred a written option Emotions Questions Tiredness impacted experiences but was not measured Added question to report energy levels Enjoyment of the new question; improved context for emotions Coping Questions Confusion in reporting coping mechanisms First asked if action was needed before prompting coping strategies Reduced confusion; easier to report on coping mechanisms
Background: Everyday social and emotional experiences shape mood, and consistent negative experiences can contribute to mental health challenges. With significant social and developmental changes, adolescent girls face heightened risks for psychopathology. Ecological momentary assessment (EMA) gathers intensive longitudinal data on individual experiences. While EMA studies increasingly include autistic samples (Chen et al., 2016), to our knowledge, none have involved autistic individuals in the design of EMA protocols. This is a clear gap, as conventional EMA tools may not fully capture how autistic adolescents interpret questions or process experiences. To address this, we used community-based participatory methods to assess and refine an EMA protocol for autistic and non-autistic girls.
Methods: Nineteen adolescent girls (10 autistic; 9 non-autistic) ages 13.8 to 16.8 years (M=15.1, SD=1) participated in an iterative co-design process to refine a pilot EMA protocol across two waves. In Wave 1, participants field tested the EMA protocol for one week, then completed semi-structured cognitive feedback interviews. Feedback interviews were transcribed and analyzed for key themes. Three months later, Wave 2 repeated this same process with a revised protocol incorporating participant feedback.
Results: Qualitative feedback from Wave 1 showed evidence for the feasibility of the pilot EMA protocol. Participants found the protocol quick and easy to use, with many noting increased mindfulness of daily activities and emotions. However, participants also identified areas for improvement, including the need for clearer survey items and enhanced methods for capturing daily moods and experiences (Table 1).
Conclusion: This study highlights the importance of involving autistic and non-autistic girls in EMA design to improve feasibility and data accuracy. By incorporating feedback, we addressed key challenges, enhancing engagement and data quality. These findings support participatory approaches in designing research tools that effectively capture daily mood and activity fluctuations. Future work should refine these methods in larger, more diverse samples. Understanding how different populations perceive these tools is an important step in improving inclusive data collection.